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On Caring for Myself

“Mom, I don’t like it that you sleep all the time. I don’t like it when you nap on weekends or go to your room to rest when you come home from work.”

Joel’s words cut me to the quick. My 10 year old son is very sensitive. He is a sweet, kind boy who has a smile for everyone and a natural gift of leadership. He would never intentionally harm anyone by what he says. But his words hit me like a slap in the face.

In our home, it is completely normal for Ben to spend hours in bed every day. Often he is asleep when the kids come home from school (or he goes to bed shortly thereafter). The children know that it is necessary for Ben to get his rest, care for his brain and remain seizure free. But the sad truth is, it’s never OK for mom to be weary.

Yet I am weary. And I refuel best by escaping into glorious sleep.

I sleep because I’m tired. I sleep to escape the difficult realities of my life. I sleep because I’m depressed. I sleep because I just worked a nine hour day and I come home to face laundry, dinner, homework supervision, calendar planning, and an unpredictable husband. I sleep because I just bought new sheets and I love them. I sleep because I always look and feel better after a nap.

Recently, the New York Times ran a cover story about the stress of brain injuries on marriage. The article talks about “what they call ‘ambiguous loss.’ Every day, reminders of the damage appear and disappear, and often couples struggle with grief that is never fully resolved and must constantly be reassessed.”

I sleep because I grieve daily.

Grieving takes energy, both emotional and physical. Before Joel said anything to me, I did not feel guilt over my naps. My life is stressful and painful and I need to find ways that I can not only survive, but thrive. Napping provides the refueling that I need to be refreshed and available for my family. But it breaks my heart to realize that my coping mechanism is bringing pain to my children.

I now carefully consider the circumstances before I take a nap. I seek out opportunities to sleep when my son is otherwise engaged. I talk to him about my need to de-stress with sleep. I let Joel know that he is welcome to come and wake me anytime he needs me if I sleep longer than an hour. I explain to him that just like he needs to play after a full day of school and homework, Mom needs to rest in order to recharge and remain kind, calm, and relaxed.

Our communication is helping. But it adds another level of grief to my life to know that the primary way I care for myself brings pain to my family.

I have many hobbies and things I like doing “just for me.” Writing here is one of them. Knitting, baking, cooking, and spending times with friends are ways that I de-stress. But napping seems to be the most important way that I refuel and care for myself.

This week, as I approach March 5th, I am mourning the loss of my beloved mother.

This week marks the 10th anniversary of my mother’s death to breast cancer. It also marks the 8th anniversary of Ben’s life-altering status epilepticus and subsequent memory loss/amnesia (strangely, they don’t make a mug for that!).

These two events are forever linked in my mind. Ben experienced a fairly large seizure while we were visiting my parents the night that my mom received her cancer diagnosis. Though my mom knew about Ben’s epilepsy, she also knew him as a healthy, thriving musician, doctoral student, and college teacher. I don’t think any of us could have envisioned the changes we would experience in our lives due to Ben’s seizures.

It is inconceivable to me that I have been through so many unimaginable, life-altering experiences since my mother died. I often wonder if it was God’s mercy in taking her before Ben got sick so that she didn’t have to see us suffer. But I also know how much I miss her. I wish I could call her for support. I wish I could call her and cry. I can’t believe the things I’ve lived through without my mom knowing about it. She would not recognize my life.

There is an old Bette Midler song from her 1990 album “Some People’s Lives” that has always moved me: “Since You Stayed Here” (click on the link to listen). It’s a song about a break-up, but it seems appropriate to post on this anniversary of my mother’s passing away. The lyrics are:

You’d never recognize the room. The pictures all have different frames now. And all the chairs are rearranged now. Somehow, I’ve thrown out every souvenir. Yes, there’ve been changes made since you stayed here.You’d never recognize the street. The neighbor’s kids play different games now. The colors in the trees have changed now. Strange how I’ve hardly thought of you this year. Yes, there’ve been changes made since you stayed here.
The same address, the more or less. More happens, less matters, I guess.You’d never recognize my life. The party-givers know my name now. And when I cry it’s not the same now. Somehow, I never waste a single tear. Yes, there’ve been changes made since you stayed here.

Dear Mom,

Since you’ve been gone, I’ve walked a road I never could have imagined.

I moved to a new house. I gave birth to a daughter who I named in your memory. I’ve remained married to a man who has suffered incredible physical, emotional, and neurological damage…and despite the bumpy road, we are still best friends! We’ve battled addiction and depression, hospitalizations and brain surgeries . Dad remarried. Gary got married. I went back to work, starting several new jobs in different careers. And the kids…oh Mom, they have grown! Emily is almost a teenager and she’s beautiful and smart. Joel is everyone’s friend…not at all like the screaming infant he was when you last saw him. And Meg…well, you never met her, but she is the most dynamic, active, intensely joyful seven year old you’ve ever met. Our kids are kind. And they’re funny. You would love them.

Here is what they look like today. Aren’t they beautiful:

I am not the same person I was when you died, Mom. But because God holds me in His hand, I think I am growing more into his image.

I miss you, but rejoice to know I’ll see you again in heaven.

Love, nancy

Please join me on March 5th in remembering my wonderful mother, Myrna Goodman Ginstling. Her faith helped bring me to the Lord and her perseverance through trials set an example for me and for so many others.

And on March 8th, join me and my family as we celebrate with our annual “Ben is Alive” party. Anniversaries may be painful, but we do our best to give thanks as we remember all that the Lord has done in our lives. It’s not always easy, but He walks with us every step of the way.

I remember the days of old; I meditate on all that you have done; I ponder the work of your hands.(Psalm 143:5 ESV)